I wanted to let any followers know that after a long, difficult two year battle and more pain and suffering than any one person should ever endure, my beautiful only daughter, Abra Elaina Hall, died in my arms at 4:53 AM on July 3, 2014.
They say the hard part is over, but right now, it sure doesn't feel that way.
Abra is survived by myself and her brother, Colin, and her step-siblings, Austin, Annie and Gracie. Also, Abra's awesome stepmother, Mary and Mary's husband Peter, my incredible friend, Roby, and my partner, Tommy. People who were all with me during the final days and moments of Abra's life.
Abra wanted to be cremated. I am trying to plan a Celebration of Life for her on what would have been her 28th birthday, August 11, 2014. One of her friends has set up another GoFundMe page to assist with Abra's final expenses . . . because
I still have paid only a small portion of the debt I incurred taking her to The Burzynski Clinic for a useless treatment, which was the reason for this page. And while that was a huge mistake, at least I have the peace of mind of knowing I did everything in my power to save her and keep her with us for as long as she was able to stay.
I knew my daughter was special, but had no idea how very loved and admired she was. They are expecting a huge crowd for her memorial and her wonderful, loving friends are right now securing a venue large enough.
I just came back to work today. Not sure how that's going to be, but they need me here and gave me so much time off while she was alive - when it mattered - that I feel obligated to at least try.
I want to thank all who have continued to offer their love, concern and support, and for those who are still trying to stop Dr. Stanislaw Burzynski from doing to anyone else what he did to us.
Once Abra had been home a few weeks, her condition seemed to stabilize and, for the most part, she did well . . . or as well as can be expected for someone in her condition. What I was finding was that it was so much work for me, there is no way I could continue to do it long term. Her paid caregiver was only allowed a certain number of hours per month, I didn't want to take advantage of the kindness and generosity of my best friend by expecting her to be there too often, Abra's brother had to go back to work and her step mother, the few times I asked, was not available. This left me to do the majority of the care by myself, and it was round-the-clock. No weekends off. No holidays. And I had to arrange for help if I wanted to do anything for myself or with my partner outside the home.
The six weeks came and went and, thank God, Abra's condition has continued to remain stable. I now was faced with returning to work full-time. My employer has been above and beyond supportive of me throughout this ordeal that began with Abra's diagnosis back in August of 2012. I absolutely HAD to get back to full-time work and hospice doesn't provide enough support at home to enable me to do this. Sadly, there was only one option. Abra would have to go to the SNF I had originally intended to keep her out of.
This was the hardest decision of my life, and it was met with much resistance on Abra's part (and understandably so). However, I saw no other option. Whatever the alternative, the most important thing was to have her somewhere where she would be safe and attended by a person or people who were capable of meeting her many needs at all times.
Abra is now on her tenth day in the SNF and she is not happy there. I feel extremely guilty and sad about this choice I had to make. My goal is to decorate her space even better than home so she feels comfortable. There are definite pluses to being there over being home. For instance, Abra LOVES visitors and can now have them whenever she feels up to it. This was NOT the case in my home. In fact, it was the source of a lot of tension between us. She can even have to occasional overnight guest. Someone has donated a futon to Abra and as soon as I can arrange to have it moved for her, she'll have a place for her frequent friends to sit, or even crash, when they come to visit.
Apparently, the food is very bad. I've heard this confirmed by every single resident that I've spoken to. In fact, it's kind of a joke among residents. I'm looking into a mini fridge and a microwave so I can stock her room with soups, noodles and other canned and packaged foods that she can fix herself. Plus, we can put some fresh stuff and/or leftovers in a mini fridge. We just need the funds to do so.
The SNF takes residents on outings and field trips but you need and electric wheelchair to participate. Since Abra is on hospice, the insurance will not buy her an electric wheelchair. We found one in fairly decent condition for $150 that needs new batteries and a charging cord I found on EBay for $19.99 plus shipping costs. You have to replace two batteries when they go dead. I found a deal online for two online for $149, which this includes the shipping. Once we get these installed, Abra will be able to go out on nice days and buzz around town. I think it will make her feel good to get out of the place when she wants to.
As far as Abra's continued health status, we just don't know. Swedish doctors said this will be a "day to day" experience and that she could experience anything from a sudden rupture of the tumor blood supply causing a brain bleed that would result in a coma; to a slow shut down of the major organs.
I spent the day with Abra yesterday for Mother's Day and noticed that she has severe edema in her feet and lower legs. She was also having issues with pain because she was refusing her pain meds saying they made her nauseous. This is because the SNF staff had her on the wrong meds. I think I got the medication issues straightened out with the nursing supervisor today.
I ask that you all just keep praying for a miracle recovery and/or no suffering and that Abra adjusts well to her new living situation and is happy with it.
If you feel comfortable doing so, please share this page on Facebook and get the word out.
Thanks for caring and taking the time to follow up on her story.
Abra began experiencing difficulty walking and was falling frequently by late January. She was also having leg tremors and pain and low back pain, in addition to some other problems. Her appointment with the Ivy Brain Tumor Center at Swedish in Seattle was rescheduled to a sooner date, as they were very concerned about the rapid change in Abra's condition. The day before the appointment she fell and hit her head so hard she had to go to the ER for stiches. When we arrived at the appointment, Abra began experiencing a sort of panic attack and was unable to participate in her MRI (which would have taken over three hours). She was in severe distress and ended up being admitted to the hospital then and there. They later did the MRI under anesthesia. The results that came back were devastating.
Basically, the doctors said that the Leptomenengial Carcinomatosis had progressed at an unbelievably rapid pace and her spine was covered in inoperable tumors that were compressing the spinal cord. This explained the leg and back pain, twitching, falling and other problems. Apparently, the tumor in the brain itself was growing again as well. Sadly, the doctors and social workers pulled together to meet with us and told us there is nothing more they can do medically to help Abra and it was time for hospice. The prediction for her life expectancy was 1 to 6 weeks as of March 8, 2014.
The Swedish team began making arrangements on their end right away, but told me it would take several days. All in all, Abra was in the hospital in Seattle for about 10 days. In the meantime, I had a few days to decide where Abra was to go from Swedish. Would we send her to a skilled nursing facility (SNF), or try to care for her at home? Initially, all my family and friends suggested a SNF. Although I was in shock and experiencing grief, I had to make the best decision for Abra. I sought answers everywhere I could. I did internet research. The Swedish social worker gave me a very small list of SNFs in our area. Several of these were crossed off by me immediately due to their horrible reputations. A few of them I called said they had no openings, or they actually did not take hospice patients. This left two to choose from. One was full and my partner and I toured the only choice we felt was available.
After the SNF "tour," I left in tears. I didn't feel it was appropriate for a young girl (especially MY daughter) to spend the last weeks of her life in a place like that. Suddenly, a SNF didn't seem like an option and I had to switch gears and see if it was possible to muster the resources to do hospice at home, which I knew nothing about. I called Swedish to let them know I had changed my mind and wanted to bring Abra home, not having any idea what was involved. The Swedish staff quickly made the arrangements for home hospice. I had commitments from Abra's friend and paid caregiver, my best friend, and Abra's stepmother (an RN who lived north of Tacoma) to assist me in caring for Abra at home. Abra's brother also took six weeks of unpaid leave of absence from his work to help us out.
By now, Abra was unable to walk at all. She had (semi) walked into the hospital on February 27th (we had to bring a wheelchair because of the falls and because she couldn't walk long distances without help) and she was paraplegic by the time she was sent home on March 8th. For anyone who hasn't experience hospice, it was all a learning experience for us all. As it turned out, Abra's stepmother really wasn't able to help. She lives a 90 minute commute one way from us AND she has 9 children and commutes to Seattle for work. God bless her for offering, but the commitment was too much for her with what she already had on her plate.
Once we got Abra home, it became apparent that taking care of a paraplegic is so much more daunting than could ever be imagined. And home hospice doesn't provide nearly the support that is needed to care for a loved one in the condition Abra was in. They don't provide any kind of nursing care at all, except for the twice weekly visits of the Hospice Nurse following the case, where about 30 minutes is spent talking about how things are going. Hospice provides a bathing aide a few times a week, a social worker (who I saw 2 or 3 times in 2 months), a chaplain, prescription medications, supplies and equipment (like a hospital bed, commode, oxygen tank, and eventually, a Hoyer lift). That's it. The Hoyer lift allows one person to move her from place to place, but it is large, awkward and cumbersome. And it takes time so if someone has to go to the bathroom quickly, for instance, forget it.
IF Abra were able to walk and do some things for herself, it would be totally different. However, that was not the case, and it was easy to see once we started actually doing it. Transferring her from bed to wheelchair, wheelchair to commode to chair, etc. was impossible for one person to do. The first few days she was home, her caregiver and I had to set her down on the floor rather quickly, rather than drop her, because it was apparent that the transfer was not going to be successful. I even had to call 911 once to come pick her up off the floor. Once we got the Hoyer, it enable one person to care for her alone, but it was very time consuming.
I don't even know where to begin. Last Friday we got the worst news possible. It seems that Abra is experiencing a very rare complication of her cancer. She has been diagnosed with leoptmenegial carcinomatosis. The tumor activity has spread to the lining of her brain and her spinal cord. Her doctors are trying to treat the condition with a combination of Temodar and intravenous Avastin, but the prognosis is quite scary.
What led up to this was yet another hospitalization. On Friday, December 13th, Abra had another seizure. This was the worst one yet. After she was stabilized, she was transferred to Swedish Hospital in Seattle. At first, the physicians continued to insist that the seizures were Abra's psychological response to overwhelming stress by claiming that she was experiencing what they call a "conversion disorder." Basically, this is their professional (and I use the term loosely) way of saying these intense seizures, headache pain and vomiting were all psychosomatic. I knew this was not the case. Her neurologist in Seattle even had the nerve to tell us that Abra needed to see a psychiatrist when we got home if we wanted to see a resolution to the problems. Mind you, her memory has been so severely affected that at times, she didn't even recognize ME when I went into her room. Or you could sit and visit with her for an hour, leave the room for five minutes, and when you came back she didn't even remember you had been there. She has been told about her condition, but can't remember what she has been told. Maybe this is a blessing. It's pretty laughable that these doctor's would have suggested that our only option would be talking to a mental health professional!
A spinal MRI and a spinal tap were finally ordered last week and the results confirmed this horrendous diagnosis. It explains all of the symptoms Abra has been going through for the last six weeks - intractable headaches, back pain, seizures, vomiting, dizziness, etc.
According to the information I can find, there is not a lot that can be done. Her oncologist refuses to give a prognosis (life expectancy) at this point. He says he might feel more comfortable doing so after treating her with the chemo drugs and reassessing her in about 4 weeks when they do another brain scan.
I am asking that you pray for my daughter. Pray for a miracle to heal her. Thank you to everyone for your continued support.
Abra has been hospitalized twice since my last update. She is having the same medical issues. She spent last week, including Thanksgiving at Swedish Hospital undergoing testing for possible seizure activity. She is home now and doing pretty well, but she can not be left alone. I am back to work again, overwhelmingly behind, and afraid of losing my job. I am currently trying to get help form the state for someone who can come in and stay with Abra to make sure she is safe so I can continue to work. If not, we lose our only source of income and our health benefits, making a situation that one wouldn't think could get worse, just about as bad as it can get. I'm hanging by a thread, but at least I'm still hanging. Sorry for not posting more details about Abra. I will try to do this when I have more time. Thanks for everyone's support.
Below is a link to the story on Burzynski. Even if you don't donate, please spread the word and stop this man from becoming a millionaire off the desperate and dying people who pay him tens, or even hundreds, of thousands of dollars for false hope:
I received a call from Liz Szabo at USA Today. A story about the Burzynski Clinic, featuring Abra, will be in tomorrow's issue. In order to protect others from being taken advantage of in the way we were, Abra and I are trying to help get the word out about why people should NEVER give their money to the Burzynski Clinic. I will try to post a link as soon as possible.
November 14, 2013: Abra was just released from another hospital stay about 90 minutes ago. I noticed that she basically slept around the clock over the weekend and was worried, so I asked her caregiver to keep an eye on her for me. The last time that happened, she ended up in the hospital for a week with a life-threatening lung infection. She spent the night at a friend's on Monday and wasn't home when I left for work on Tuesday. Her caregiver later called me and said the friend she'd stayed with had been up with her all night because she was complaining of an agonizing headache, was vomiting and was disoriented to the point of not knowing where she was. I instructed her to meet me at the emergency room with Abra. At the ER things only got worse. Abra was delusional and we could not get her to wake up. She was finally admitted for observation and testing around 6:00 pm that evening. A CAT scan and all of her lab work results were normal (or as normal as they can be for someone with a Stage III brain tumor) and she finally started "coming to" yesterday. Doctors ruled out the possibility that the issue was caused by the tumor and have said they assume the problem was an issue of too much medication and not enough sleep. She has had sleep issues since adolescence and the illness has only exacerbated the problem.
On Monday, November 4th, 2013, we took Abra to Seattle for her three month check-up. Dr. Henson initially saw a little more shrinkage in the tumor, but when he did a physical exam, he noticed she had less peripheral vision in her left (only) seeing eye. He went back to the MRI to take closer look with two other providers and they found something else near the tumor. He says it might be a cyst. He just does not know. It could be a new tumor as AA or Stage III brain tumors are known to be highly aggressive. Abra had to travel back to Seattle that Friday (November 8th) for another "emergency" MRI to get a closer look at this area of concern. They will do another MRI in Seattle in six weeks and compare it to the baseline done on November 8th. If the cyst theory is confirmed, they want to put her back on steroids. Unfortunately, this drug is what caused Abra to develop Cushing's Syndrome, which she is still recovering from. If the steroids don't work on the cyst, the doctors say they may have to perform another craniotomy and try to drain the cyst with a needle. At that time, I assume they would do another biopsy, if the mass turned out to be a tumor in order to determine if there is a progression of the cancer to Stage IV. If the mass is a tumor or progression of disease, we didn't discuss alternatives. I don't think we were ready to consider that possibility anyway. Please continue to pray for Abra's healing and recovery.
Thanks to all who visit here, those who have donated and all of you who offer love, support and prayers. We appreciate each and every one of you.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ...needs your help. I am currently battling a brain and spinal fluid diagnosis..stages 3 and 4. In June 2012, I started to lose vision in my right eye. I saw an eye doctor locally who said it was a swelling in my optic nerve which could be caused by many things. The doctor recommended I see someone who knows a little more about the issue that I was having, so they sent me to Pacific Cataract and Laser Institute in Centralia. The doctor said pretty much the same thing - optic nerve swelling, could be Multiple Sclerosis, could be a tumor, could be nothing...and then referred me to a neurophthalmologist in Seattle for further testing.
I saw the specialist in early July, did an MRI, and found a mass on my optic nerve. The doctor aid it was a tumor, but that it was definitely, *DEFINITELY* benign (meaning non-cancerous). The doctor was so sure that it was not cancer that he decided to just treat me himself with at-home steroid injections (which had no effect), and after seeing him again 3 weeks later, I did another MRI which showed that the tumor had grown, my vision had worsened, and this delayed my treatments by about 3 weeks. I was then referred to a neurosurgeon at the Ben and Catherine Ivy Center for Advanced Brain Tumor Treatment. The neurosurgeon I saw ordered another MRI, and although he also agreed the tumor was benign, because of my worsening vision, he suggested we do an open craniotomy to biopsy the tumor. At this point I was also informed that the tumor is inoperable so they can't remove it, but they would need to take a piece to test to just MAKE SURE it wasn't cancer. I go and see the neurosurgeon, set up my surgery date, and wait. By this point, my right eye had gone completely blind and I was told there was no way that the damage could be reversed.
On August 3, 2012 I underwent the surgery and biopsy...and that benign tumor they were SO sure was benign ended up being malignant (cancerous).
I was diagnosed with a stage III (stage IV is the absolute worst, most aggressive form) astrocytoma. Primary brain cancer. Specifically, a glioma which is a nerve tumor. Because of the location, my left eye will likely also go completely blind if we can't stop the growth of the tumor. I just had an MRI about a week ago and it has grown by 40% within a month.
We are putting chemotherapy and radiation on hold right now. I am in Texas currently until September 26th doing this alternative, non-toxic treatment before I do anything else that will make me sick and make my hair fall out and possibly not solve the problem at all. The worst case scenario right now is nothing happens at all, and I will continue with another form of treatment. A lot of people who die from cancer die from the effects of radiation, not the cancer itself. Also, if I do radiation, the doctor said because of where the tumor is located, it will destroy my pituitary gland, I will not be able to have children, I will go into menopause and I will definitely lose my other eye. I want to try and prevent these problems if at all possible, hence why I am taking this route in the first place.
Thank you for taking the time to read this and thank you for any help you can provide.
Here is another story provided from my grandfather:
"My 26 year old grand daughter was recently (within the past few months) diagnosed with an inoperable stage III (possibly IV) malignant astrocytoma located on her optic nerve and it growing into the optic chasm. Within approximately a month, MRI's showed that the tumor had grown by 40%. It is extremely aggressive; The first sign that Abra experienced was loss of sight in her right eye....she went blind. The tumor's growing very quickly and my daughter, thru her employer, borrowed money to begin treatment with Dr Burzynski in Houston. She's there now and is scheduled to leave on the 26th to return home to Washington State. Abra's sight in her good eye is now getting worse. A major problem with Burzynski is the cost and unless you're wealthy you're prevented from completing, much less starting, his treatments so we're interested in trying to get as much assistance from any outside source we can possibly accumulate. She will need to be on treatments continuously for at least a year, and these treatments will cost on average about $7,600 per month. Any and all help is greatly appreciated"
I never knew your daughter but I've had the pleasure of meeting you multiple times and it was so very clear how much love you have for you family. There is no way to console a mother for such a loss, but I send you my support. I hope you can feel the love and support the community is feeling for you and your family.
Hi Abra. I donated awhile back - just read the update today. I had surgery for pancreatic cancer in October - and I hated being in the hospital. I really want you to be able to get that wheelchair or the mini - fridge. Whatever would bring you a little comfort. All my good thoughts are with you. I know you don't know me, but if you ever want to chat - you can text me 9413507165. Just know that me, my husband and all my cats send love to you!
Your story is so moving. You are an incredibly strong woman. I have a 6 year old daughter who had emergency brain surgery 2 days before her first birthday to remove a brain tumor the size of an egg. She also suffers from seizures and vision problems. Every six months when she gets her MRI to see if it's growing back I am overcome with fear that the news will be bad. My heart goes out to you and your family, especially your mother. I know the helpless feeling of watching your child suffer from the horrible disease of cancer. I wish nothing but the best for you and hopefully I can donate more when I get paid!